Tag: Living with MS

The Singing Cure

MS is a bit like the whack-a-mole game we played at fairs. No sooner have you whacked one symptom back into its hole than another pops up. Not long after fulfilling my long term goal of walking to Belle Tout, I met up with the MS nurse. She was kind and helpful but distressingly diagnosed my troublesome night cough as dysphagia. And yes, it is as horrible as it sounds.

Essentially, it means that I do not have the ability to swallow like healthy folks. Taking my daily vitamins is a struggle; talking while eating impossible (it does improve table manners) and frequently waking to a choking cough is tiresome – literally and metaphorically.

Singing for health

Dysphagia is common in a whole slew of neurological conditions and frequently occurs in old age. Not willing to move onto pureed food any time soon, I wondered if there was something that I could do to delay or avoid its progression. Speech therapy (think throat physiotherapy) is one and singing, it seems is another. When I suggested it to the nurse, she enthusiastically agreed, and so my new experiment has begun.

I’d noticed that my cough occurred not long after I had to give up choir. Re-joining is not really an option with Covid still so prevalent, but I love to sing and if I have to do it alone, well, then I must.

In my investigations into the benefits of singing, I discovered that I am not the only one who would do well with more song in my life. Many of my readers, I know, are committed and excellent singers, but if you are not in their number perhaps the benefits listed below might tempt you to join them.

Stress reduction

Having a good sing, usually makes us feel better and certainly less stressed. The reason? Singing causes a drop in adrenaline and cortisone levels. When we sing we regulate our breathing. Taking deep and measured breaths are exactly what we need when life threatens to overwhelm us and singing does that with the added benefit of mood lifting lyrics.

If we can sing with others, the benefits are even greater. When I attended choir, I think there was as much giggling as singing going on and I left feeling ebullient. It is important that the choir is not overly strict. A community choir which meets just for pleasure will reduce your stress; one that meets for a perfect performance is unlikely to do so.

One of my favourites by my choir

Don’t worry, be happy

Most of us think of singing when we are happy, but it is something we might consider when we are in the doldrums. Evidence suggests that if you want to improve your outlook – sing a song. It can increase your dopamine levels and release endorphins which will enhance your mood. Dancing and singing together have additional benefits.

Both singing and dancing are aerobic activities giving the lungs and heart an excellent workout and improving the flow of oxygen around the body. They may also help with cognitive function, which relies on a good supply of oxygen to the brain. Learning new lyrics is another good mental exercise.

Singing has even been shown to increase the amount of immunoglobulin A the body produces (up to 150%). This boosts the immune system and helps ward off those pesky, misery producing viruses.

Five a day

Singing for just five minutes a day can bring some of the benefits above. Increase it to fifteen for maximum impact. Like all good habits, I find it easiest to give it a time slot (after language learning and before settling down for the evening) to keep on track. Having fun things to sing also helps and I’ve found a number of great songs on YouTube with lyrics in addition to my old choir notes. One I especially love is ‘Let it go’ from Frozen. I’ve posted it here if you would like to join in!

Go on! You know you want to!

Lullabies

Finally, singing and listening to song is the perfect way to calm down before sleep. Hermione has lullabies before bedtime and she settles almost instantly. Perhaps your loved ones would like a song too. Why not give it a try?

Source: ‘Singing for health and well-being’ The British Academy of Sound Therapy

A Walk in the Park

Flush from my success in scaling the Belle Tout lighthouse walk, I was ready for more adventures. My husband took a day off on Tuesday to take advantage of the glorious weather and we headed to Sheffield Park Gardens, which lie about an hour away.

We also thought it was time to put our National Trust cards to use somewhere other than the Birling Gap car park. I confess my anxiety soared at the prospect of the drive and unfamiliar surroundings, since we haven’t ventured anywhere new since lock-down. But when the only fear is of fear itself, we can only do one thing: face it and manage our discomfort.

Being proper National Trust members, the first thing we did was head to the cafe for lunch (one must ease oneself in gently!) We ate al fresco in a little courtyard and were joined by several adorable dogs and a little robin who perched on the chair opposite mine.

A table for three Image: Arjan Stalpers on Unsplash

Sadly, for him, there were no scones on offer, but Hermione enjoyed a portion of our baked potato.

A leafy legacy

Sheffield Park is an arboretum on a huge scale. The number of specimens on display is breath-taking and their different colours, heights and branch formations give as varied a show as a well planned flower bed. Scotch pines soared, while the pendulous trees like willows added grace and movement. The rhododendrons had finished flowering, but the azaleas were in full bloom giving a startling splash of colour amidst the palette of green.

A beautiful specimen with cup shaped flowers
Image: Karen Costello-McFeat

And though this is a garden devoted to trees, there is always colour to be found. Trees flower at different intervals. (Yes, all trees flower, but you may have to look for the blooms, which may also be green). Throughout spring and summer there are splotches of pinks and purples, white and yellow peeking from the leaves. In the autumn, the trees put on their own spectacular display, which rivals a New England fall.

Understory

Tempting though it might be only to look up in such a setting, there is much to be enjoyed at the more humble, ground level.

As this was my first visit in a very long time with walking poles rather than my scooter, I decided that we should take all the obscure routes away from the paved paths. Tripping hazards of tree roots aside, it was well worth the effort. For away from the main pathways were the un-mowed areas filled with woodland delights. One field was liberally scattered with wild orchids. Foxgloves popped up all along our walk with the common, but equally beautiful, buttercups and daisies.

Wild orchid Image: Karen Costello-McFeat

The perfect balance

I love trees. If I had the option, I would live in a forest. The only thing for me that makes woodland even more perfect is the addition of water. At Sheffield, they clearly had the same idea and a series of lakes step down from the top of the park to its bottom end that peters elegantly into farmland.

We arrived just before the waterlily festival, but already the waterlilies were exploding into pale rose and deep fuchsia pinks.

The waterlily pond
Image: Karen Costello-McFeat

To my delight, I had managed a decent tour of the grounds – the many benches certainly easing my journey. And my anxiety? It began to dissolve at the sight of the first azalea bloom. Trees are good like that.

To the Lighthouse

Almost seven years ago, I suffered a catastrophic relapse that left me in hospital for ten days and effectively paralysed from the knees down. Modern medicine did its miracle and I was able to leave the hospital on two, rather wobbly legs. Newly diagnosed with MS and more than a little frightened about the future, I was also grieving for my past.

Not so very long before, I had led an active life-style: playing tennis, cycling and walking the Downs. The first two didn’t seem like they would ever be a possibility again, but the Downs? Would I someday, one day be able to enjoy at least a tiny stretch of them?

Though my walking was painful, slow and bearable for only very short distances, I set myself a goal: I would once again do the glorious walk from Birling Gap to the Belle Tout lighthouse. When I told a friend this, he smiled politely and gave me a kindly if pitying look. I don’t blame him. It was a ridiculous aim, a fantasy to keep me going, an insubstantial dream. But that’s the thing with dreams – they sometimes come true.

The Beautiful Belle Tout Lighthouse
Image: Karen Costello-McFeat

Last Saturday, mine did. It was a gorgeous early summer day and I’d just spent several hours writing in the National Trust cafe at Birling Gap. A little stiff from sitting for so long, I thought, why don’t I try the beginning of the Belle Tout walk? I’ll get some fresh air and see if I can manage the initial steep slope. My stamina for walking had been increasing for some months now and I was in a very positive frame of mind.

Shall I stay or shall I go?

So off I set, without my usual walking poles and without a companion, but the walk is so popular and so busy, I knew I could easily call for help should I need it.

The slope was mounted without too much difficulty and the joy of being up there, high on the cliffs, the blue of the sky stretching for eternity was intoxicating.

Downland walks are certainly not the easiest – tussocks of grass, flint, chalk mounds and uneven terrain constantly threaten to upset you and send you sprawling.

So to avoid such a fate, I ambled along studying the ground beneath my feet and the furze and flowers to my left. There were any number of tiny, chalk grassland plants including wild roses and beautiful conical flowers that I think were orchids. Chalk and flints littered the path, the latter being the source of Eastbourne’s wealth from Neolithic times.

No ordinary rock – classic flint
Image: Karen Costello-McFeat

When I looked up, I realised that the lighthouse really wasn’t so far away – I might just make it. Despite being a struggle, I covered the final stretch. For the final yards, I wasn’t entirely sure that my legs would cooperate, but we reached the wall and I was ecstatic.

The long walk home

The only problem now was that my legs were are shaky as a new-born foul’s. The walk back was going to be very slow and a little tricky, but fuelled by my success and not a little adrenaline, I headed home.

The winds were high, but behind and to the side of me, so that helped. However, I kept a very good distance from the cliff edge, as one great gust might well have sent me over!

A view that made it worth the effort Image: Karen Costello-McFeat

In what seemed no time at all, I was back at the car park, eager to return home and tell my husband of my achievement.

And that it occurred here was especially poignant. Birling Gap and the cliffs that guard the coast are my favourite place in the world. I have always come here and when things were especially difficult, I could manage to at least enjoy the views and the biting air crisp with sea salt. For years, I had parked in the disabled bay and with the aid of a stick, staggered to the cafe. Now, my blue badge seldom leaves my bag.

View from the cafe balcony Image: Karen Costello-McFeat

Reality check

Buoyed with this success, I spent the rest of the week in a delirium of joy. Perhaps I could overcome this wretched disease; perhaps recovery was truly possible.

But then, I went to visit my MS nurse yesterday and was forced to concede just how much my condition affects my daily life.

My husband had taken the day off and invited me to join him for a woodland walk with the dog. Tired from an early start and stressful hospital visit, I only just made it back with his support. By the end, he joked that I looked like one of the contestants from the Monty Python Upper Class Twit of the Year skit where they have to (and fail to) jump match boxes. The protruding tree roots were my matchboxes and equally challenging to get over. We ended our walk in fits of giggles.

Keep on dreaming

What I haven’t mentioned is the physical effects that such exertions have on me. Upon returning from my Belle Tout walk, I rested for the evening, slept for twelve hours and woke feeling that my legs were suspended over hot coals. Until early afternoon, I wandered about in a satisfied stupor until we left to see the Jubilee celebrations in a nearby village.

Not content with this one achievement, I’ve been stretching my capabilities all week, with the consequence of early nights and naps to combat the fatigue. I am truly exhausted and would happily fall asleep on a log. But, I am also full of hope.

No, I am nowhere near overcoming this disease and just discovered that the horrid night cough was what I dreaded most – a symptom of MS where you lose the ability to swallow. A solution? To sing. That is the kind of physio I like.

And what would I like you to take from this? No matter what your situation, pursue your goals. Don’t make them small, because you are afraid you may never achieve them. Make them big. The likelihood of my making it to Belle Tout seven years ago was about the same as the average Joe scaling Kilimanjaro. We can have no idea what we can achieve until we set our sights and try.

I really miss cycling and think that an e-bike might work…

The Space Between

Last Sunday, I experienced a wonderful example of synchronicity at my Quaker meeting. Having completely overdone it all week (and several of the weeks before), I was feeling exhausted and emotionally depleted. My desire to complete The Artist’s Way course properly meant that a further one to two hours needed to be found in my day to meet all my commitments. Yet, exhaustion meant my early rising was becoming less manageable and my routine of meditation and yoga was being squashed into the margins of the day. Something was going to have to give.

The meeting, itself a much needed source of quiet and reflection, was opened with a section of poetry. It went like this: 

What makes a fire burn
is space between the logs,
a breathing space.
Too much of a good thing,
too many logs
packed in too tight
can douse the flames
almost as surely 
as a pail of water would.

From 'Fire' by Judy Brown

We all nodded, listened again and went on to our own thoughts on the matter. I suspect that everyone of us was aware of how our lives attempt to contain ‘too much of a good thing’. Our fear of missing out often resulting in our missing everything. (In my case, because I’ve spent the day resting or in bed.)

Making space

How do we make space when there are endless demands on our time and equally endless things to do and explore? This question has haunted me throughout the week. But I want to do everything; have a full social calendar; be creative; be Zen – my child self complains. And though popular culture suggests that ‘having it all’ is the most natural goal in the world, real life quickly reminds us otherwise.

Fires and we burn brightest when we have air to breathe Image: Max LaRochelle on Unsplash

The non-negotiables

Our first task in moving towards a more manageable life-style must surely begin with list of things that we absolutely have to do. These are what I consider the non-negotiables. Mine include all those activities that ensure I maintain optimal health for my condition. These include:

  • Sufficient sleep and rest time (ten hours per day) – yup, not a lot of day left already!
  • Yoga
  • Meditation
  • Cooking and meals
  • Personal hygiene and health care

Next, I’m going to add those other necessary activities:

  • Exercising Hermione
  • Maintaining a home
  • Down-time at the end of the day
  • Communicating with others
  • Work and volunteering

I’m now at 18.5 hours!

Things I absolutely want to do!

  • The Artist’s Way and creative work
  • Social activities

This leaves me with about 1 hour leeway for unexpected events like notifying everyone of my son’s engagement. It has proven a rather enlightening (if depressing exercise). But it is one that, should you also be finding yourself frazzled by the end of the day, might be worth doing.

We all have the same twenty-four hours and most of us have some control over how we spend them. Much as I’d like to make my day more elastic, wishing will not make it so.

Even with the wriggle room of holidays and weekends to catch up on housework, gardening and chores, we need to be careful to keep some of that time available for what it is meant for – a proper rest.

Space invaders

What gobbles up your time? Image: Bady Abbas on Unsplash

With so little time to do everything that needs to be done, we simply cannot afford to have others siphon away any of it. All our time is precious, so if we are constantly bombarded by those wishing an audience, we need to politely and firmly say no.

If, like me, this is really hard, we can make a mental check on the time available and say, I just have x minutes. I’d love to hear your news, but after that I need to go/get on. The same applies to phone calls. For persistent offenders, try to communicate by text. They can only write so much and you at least can read it at your leisure!

We are often pressured into attending events for which we have little appetite, but again, we should not be. It isn’t necessary to pretend to be busy or to justify our position. We can still be polite and decline. Perhaps the best answer was spoken by the inimitable Bartleby the Scrivener who when asked to perform unwelcome tasks said, ‘I would prefer not to.’

I really need to practise all of these.

Space to grow

Of course, the space between referred to in the poem above, refers to much more than simply finding time to do all the things we love. It means finding the space to grow and develop into our best selves. Those who garden know that planting too closely results in stunted or failing crops. Only when we have room to explore, to branch out, can we hope to thrive.

Further, when we have sufficient oxygen to burn brightly, we can share that fire with others, whether in direct action or an enthusiastic welcome to the world. Our energy can energise others creating a virtuous cycle of positivity. So if you think that finding space for yourself is selfish, think again. It is probably the kindest and most useful thing you can do for others.

Burn bright and share your warmth Image: Nik Shulianhin on Unsplash

(No) Reading Week

No-one can say that the universe hasn’t got a sense of humour. After last week’s post in which I smugly urged us all to reduce our screen time to allow greater creativity in our lives, I reached chapter four in The Artist’s Way.

And what should be this week’s challenge? Something far, far worse than putting down my phone. For a week, I am not allowed to read – anything. No books, no magazines, no on-line articles. If it is in print, I must avert my eyes. What kind of psychopath is this woman? I wondered. Artists are invariably readers. How will I survive?

Bibliophile heaven Image: Alfons Morales on Unsplash

Is there life without books?

Because reading is what I do. I am seldom to be found without at least two books on the go. I read the labels on packaging. I read the adverts on bus shelters. When it comes to text, I have no off button.

This last week has been a rather peculiar torture. At first, I found it almost unbearable. I wanted to satisfy my itch to read the news; to take a spare half hour to read my novel; to sink into the oblivion of fiction. But at the same time, it made me question, as I have never done before, my relationship with books, and it is not as healthy as I thought.

What child isn’t encouraged to read? Image: Tim Alex on Unsplash

The literary fix

If, as Marx suggested, ‘religion is the opiate of the masses’ then I would propose that books are the opiate of the middle classes. It is not only an acceptable narcotic, it is a positively celebrated one – giving us the highs and oblivion of a class A drug.

It suggests that we live in an ordered universe when we clearly do not. It’s a simulacrum that is seductively appealing. We argue about the big issues at our book groups and base our cases on fiction. Which is not to say that such matters should not be debated, but in my experience, it seldom leads to action. Just as Marx saw religious observance as hindering political progress, would it be too bold to say that fiction may serve the same function?

When we read, our sense of a just and fair universe is upheld. For even if a book contains much darkness (as the Narnia books certainly do) it is controlled and resolved by a higher power (the author). With the exception of the highly disturbing, The Talented Mr Ripley, we can count on evil being punished and good rewarded. If only this were true in real life.

Madame de Pompadour enjoying a good read. Image: François Boucher – Unknown source, Public Domain, https://commons.wikimedia.org/w/index.php?curid=518252

How things change

Books and reading have historically been the preserve of the rich: literacy and the cost of texts saw to that. Yet, when publishing became cheaper and literacy rates rose, reading became something that everyone could do. Free lending libraries being the final nudge towards the pleasure of reading being fully accessible.

We all assume today that reading and encouraging our children to read is the highest goal. Books = good.

It has not always been this way. The novel was viewed with suspicion (being, as it was, a complete fabrication) and possibly having ill effects on the morals of the young ladies reading them. By the 20th century (and I’ll ask you to forgive any errors here as I can’t check my ideas through reading) books were not only seen as an essential part of a cultured life, but literature began to be taught at the universities. One of the strongest arguments in its favour being that reading fiction would improve empathy and moral outlook. I’ll let you decide if you think that it has succeeded.

Which is the fantasy? Image: Road trip with Raj on Unsplash

That’s entertainment!

While we extol writers and readers as some kind of superior life form, we are forgetting that reading is, for the most part, merely a kind of entertainment. My reading is eclectic at best. I love literary fiction for its mastery of language, but I also enjoyed The Da Vinci Code (and I suspect you did too!) While we imagine literature as art and best sellers as mere pulp fiction, we are forgetting that each has the same aim: to keep us turning pages.

And there is absolutely nothing wrong with that. Come the end of this week, I shall return with pleasure to the printed page. After all, reading is the portal to vast quantities of information, stimulation and understanding. We can be transported in the luxury of our arm chair to distant lands and previous epochs. A good writer will make these worlds seem absolutely tangible. Yet, they are not. They are the airy bubbles of fantasy.

Even non-fiction must be approached with caution. The fashioning of a book requires a great deal of selection on the part of the author. What is omitted may well be as significant as what is contained. It is just less likely to support their thesis.

I’m not sure if these were the conclusions that Julia Cameron was hoping I would reach at the end of this week’s trial. Perhaps she only wanted to make me aware of how much time is absorbed in reading: time that might be better spent on something more creative. On that point, she has succeeded. Not being able to pick up a book or magazine has freed time to play and dream. Even having a few minutes spare, I found myself doodling or doing origami.

A playful ten minutes Image: Karen Costello-McFeat

Confession

I have had to read a little. With my students approaching their exams, I could not be unprepared for their lessons. I’ve also kept up with emails and texts lest everyone thought I had dropped off the Earth. That aside, I have not read at all. It has been a curious experience with the pull of the written word lessening each day, while my writing has increased exponentially. Having spent so many hours absorbed in books, I wonder now what else I could use that time for.

Books will always charm me, but I suspect their central role in my life has shifted a little towards the perimeter. They are the best entertainment, but like all entertainment, they are to be enjoyed when the work is done.

The Thief of Time

Popular wisdom has it that procrastination is the thief of time, but I would demur. That title, I believe, goes to the mobile phone or more specifically, those platforms that give us ‘free’ services to contact friends and entertain ourselves.

This thought is not especially new. Yet, it was brought forcefully to my attention when one day last week (which was admittedly my birthday), I’d managed to spend three hours on my device, most notably on WhatsApp. As someone who rarely knows the location of my phone and who has all notifications turned off, I was horrified. I don’t remember being on my phone that much. In fact, if asked, I’d have said I was only on it for a little while to reply to the lovely greetings. And that was the most disturbing part. It was an invisible thief who had stolen these precious hours from me.

So many distractions Image: Dugba Cauley- Hushie on Unsplash

Time lost

It was embarking on The Artist’s Way (https://whenlifegivesyoulemons.blog/treading-a-new-path/) that highlighted how little time I have to spare. Now, I need to find an extra 40-60 minutes for writing each morning, plus a weekly two hours for my artist’s date. I ran through my day and found very few minutes unaccounted for. Unwilling to ditch my students or my work for Citizens Advice, or attempts at learning Ukrainian, I was struggling to see where this time could be ‘found’. Then I randomly looked at my screen time. Result. That was where those lost hours were lurking.

You may like to look on settings to see your screen times. Are they more or less than you expected?

Does time take us or do we take time? Image: Nick Fewings on Unsplash

My goal is to reduce my screen time to around 30 minutes per day, allowing for longer times when there are special occasions like birthdays or celebrations. Since the average use of an adult in the UK is around two hours, and in the US up to twice that, this seemed like a reasonable compromise between remaining social and remaining sane.

Time regained

Phones, and the many platforms we use on them, were created with the specific intention of getting us on-line and staying there; enabling the ‘free’ service to mine our data or sell us goods. Designed with the same ingenuity as a casino, they quickly turn us into dopamine addicts, waiting for the next notification, ‘like’ or challenge. For a full and fascinating discussion of this subject, I urge you to read this excellent article from Harvard: https://sitn.hms.harvard.edu/flash/2018/dopamine-smartphones

Do I have your attention? Image: Krzystof-Hepner on Unsplash

So what can we do to foil such ingenuity? Here are some tricks we can employ to place our phones back in their proper role: as a wonderful device which connects us to friends and the wider world but that doesn’t annex our life.

  • Remove all your apps. Yes, Wordle is great fun, but it leads to Quardle and then to posting your scores on Facebook or comparing with contacts on WhatsApp. What starts out as a entertaining five minute time filler, ends up a daily obsession. As for anything like Candy Crush and other games, I think you know where they lead.
  • Consider whether your message is a call for approval or an exchange of information. So often when we post, we are actually hoping for an ego boost. How many people reply? How many likes do we receive? Are people showing sufficient interest/awe/envy at our or our family’s achievements? This kind of communication ultimately benefits none – least of all the writer, who may not get the verification they crave and in place of joy, feel deflation. Instead, enjoy the natural boost we all receive from connecting with others in a mutually respectful and friendly way.
  • Is a text the right way to express this? Few of us enjoy long texts and fewer read them carefully, so if you have something important to say, deliver it via email or even better by letter.
  • Misunderstandings Predictive text often leads to hilarious comments, but texts in their brevity also invite misunderstandings. I try not to convey anything of importance this way-not least because I often forget to hit send.
  • Telephone times The best way for me to restrict the siren call of my phone is to establish clear times that I will look at it. I’ve decided on first thing in the morning, lunch and after dinner. No-one is likely to feel neglected with such a small interval and I can reply in one session rather than dozens of distracting ones.
  • Make the phone less attractive Like those slot machines in Las Vegas which vie for your attention with flashing lights and garish colours, mobiles too are designed to lure your eye. There are two ways to resolve this: dim the screen and change to grayscale. The latter is quite tricky to work out, so I’ve linked this handy guide to show you how to do it. https://www.wired.com/story/grayscale-ios-android-smartphone-addiction/#:~:text=If%20you’re%20using%20an,appears%20as%20the%20top%20option.
A quiet time to read Image: Heber Galindo on Unsplash

Time is on your side

What I am hoping is that by reducing my screen time, I shall be opening opportunities for creativity and valuable nurturing time. I’m not there yet. This week’s average is 51 minutes per day, but it’s progress.

Even if we only shave an hour a day off our usage, that would give us an extra seven hours a week. That’s enough time to read a novel; spend an hour on creative activities; make a delicious evening meal each day or do whatever it is we would like to do but never find the time for. We are unlikely to ever regret not spending enough time on social media, but I think it very likely that we may regret not spending enough on fulfilling our desires.